New Daily Persistent Headache Support Group

Today we heard from the Pedi-Neurologist. He wants my 11 y/o daughter to have a spinal tap and other lab work on the spinal fluids, as recommended by the pain management doctor, to see if she has ICP causing the headache. He doesn't do taps, but refers his pts. to a pedi-anesthesiologist. We should hear from this office on Monday. So, even though we aren't interested in the injections, we will follow through with the spinal tap, it may hold more answers---or rule out ICP. My daughter is NOT happy to have this done! We thought we'd avoid it, but I guess not. The headache specialist saw her in Nov. and didn't think it was needed at that point...but this is 5-6 weeks later and the headache hasn't let up yet. She is scared, I'm sure. We reassured her that they will be good with kids. (wish we could have done this during 2007, while we already met a deductable! 'Course, I'm sure we will again...since this doesn't seem to go away easily!

I'll let y'all know what we find out, if anything.

She has had worsened headaches lately, I think some of this is due to lack of sleep---her siblings are staying up later since they are out of school for the holidays. I know fatigue can impact the headaches.

(((bgcmom)))

Hi again Bgcmom, I can't say I envy her having to get a spinal tap done. I have somehow managed not to get one of those yet (don't ask me how...I don't know myself...Maybe they could see what they needed to know from my other stuff??). Still at least for this there is a pediatric anesthesiologist to do it. I would be a lot more worried about it if someone who usually did adults were wanting to do hers. I hope that the results will be helpful one way or the other.

I have a worse time whenever my sleep gets messed up or if other people get louder. My family is just now celebrating Christmas because we were waiting for my brother and his wife to get here so tonight was time to open all the presents and such. It is a lot louder here than usual and we don't even have anyone under 25. I hope her headache gets better as things settle back down after the holidays or that she will be able to manage her need for rest better (hard to do as an adult...I doubt I would have had any chance of it as a child...I hate missing stuff). Let us know how things go.

My doctor recently started discussing spinal taps with me too. I'm pretty sure i'll be having one in the next month. I'm scared to death, they also want to rule out the same thing as with your daughter. I'd be interested to see how it goes as i belive i'll not be having mine for at least a month because i don't see my doctor untill then.

I'll let ya know how things go and what we find out!

I had a spinal tap earlier this year, and I was suprized when it didn't hurt hardly at all. The needle used to take blood work afterwards hurt worse than the spinal tap itself. However, there is the "spinal tap headache" which is quite common I believe, that happens after the procedure, and its a doozy. It lasted for about 1 week after, and it felt like my worst headache that usually happens 4 days a week for a few hours, but it was 24/7. They told me this can be somewhat avoided or, lessened at least, by drinking lots of water and lying down for a while after the spinal tap. But I guess it's just one of those things we have to do to get this thing figured out. Good luck to you all. -Lana

I had a spinal tap about a month ago. It was quite painful and of course the test results were normal. My doctor was hoping that my spinal pressure would be high and that the tap would lessen my headache pain, however that was not the case. I also did manage to had a spinal tap headache but it pretty much blended in with my normal bad headache. The worst pain was my back. I could hardly walk for 3 days after it was done and then had terrible back pain for about 2 weeks. While I am glad I did it (since it ruled out a lot of nasty things), I will never do it again and don't envy anyone who has it done.

It's comforting to hear other's stories of spinal tapping. My story is about the same as Lana28's.

The spinal tap itself hurt very little. But mentally, it felt quite uncomfortable. Being curled up into a ball and having some stranger stick a needle into your back really gets your mind thinking. For me it felt so symbolic for this whole headache - the hopelessness, the absurdity of the whole situation and the constant struggling to find answers where there are none.

Turned out my pressure was too high - over 27 when it should have been below 20. Apparently this can be caused by temporary stress. If it's not temporary, I may have Idiopathic Intracranial Hypertension. So all of the sudden, it's not NDPH. Interesting.

My doctor did an excellent job on the spinal tap. But his knowledge of spinal tap headaches was severely limited. He gave the impression of such a headache coming immediately after. It did not. I felt fine.

Just to find the day after, at work, that my world was spinning around and my head was exploding with the worst headache I've ever experienced. I called my doctor but, of course, you never get to speak to him directly. Only through a secretary.

Oh what a humbling situation. Being forced to lie down to avoid excruciating pain. Not knowing for how long. It really gives you a bad feeling when Google provides better answers than your headache specialist (who's one of the most famous in Sweden, so he really should know).

The spinal tap headache went away after a week or so. But it was a week of the worst headaches I've ever had. And also the mentally worst week since this headache began (2 years ago). You know, it really gets to you when you find yourself unable to work, or even walk around. Feels like the pain has finally won. You feel defeated.

In the next few weeks I'm scheduled to do another spinal tap. A longer one, so that a definitive pressure value can be noted. This time I'll be more mentally prepared. Or so I hope to be.

I hope I don't scare anyone out of doing a tap. That's not my intention. You really should do it, to rule out other causes. Just be prepared that the pain isn't so much due to the needle. It may be. Or it may come later. Or it doesn't come at all.

But like everything else, I guess it strengthens you.

It has to.

Magnus, I don't know whether to congratulate you or give condolences on the change in your diagnosis. Some days it seems like anything would be better than NDPH, but that might not be true. It may be better if there are treatments that work though (even if your doctor needs to do some reading). I am finding more little articles on it than I thought I would (haven't really looked for the sort of stuff a doctor would need yet). It may be easier to find info on than NDPH.

I think I even know someone in real life (as opposed to the computer) who has this. She gets periodic lumbar punctures for hers. Meds didn't work well enough for her and she would have had surgery but is not a good candidate due to other health problems. She is more functional than I am though. I used to work at the same company she does (she is one of the records ladies) and I never knew there was anything wrong with her until I got my headache. So whatever she is doing it seems to be working fairly well for her. She says her headache starts coming back when it gets close to time for another lumbar puncture (every three months or so for her) but most of the time it is not a problem for her. She has other health problems that cause her a lot more trouble (I think she is diabetic). I hope you are able to get some relief now that you have an accurate diagnosis.

From your experience and from what the lady I know in real life said one of the keys to avoiding the worst of the spinal tap headache may be to not get up any more that you absolutely have to for several days. She gets hers done on a Friday and then lays around the house all weekend (her husband takes really good care of her) moving as little as she possibly can even when she feels pretty good. She is usually able to come back to work by about Tuesday. I hope that helps some of you who are about to get it done. I don't think anything can make it pleasant, but that may help make it more bearable.

Thanks. Though it seems unlikely that I do have IIH. Mostly strikes mature obese women. A description that doesn't fit me. Also the diagnosis seems to be much about losing eyesight. Something I've yet to experience.

Next spinal tap I'll try her tips of lying down for a few days. It sounds quite logical.

You mentioned you've yet to do a spinal tap. Any plans on doing one in the future?

Take care,

Magnus

Magnus, it seems unlikly to me also that you would have IIH. My neuro said that if I had increased intracranial pressure, the spinal tap would actually help the headache and the spinal tap headache would not occur. This makes sense because the spinal tap headache occurs due to low pressure, and if you had high pressure and took fluid out, this would cause normal pressue and no headache. Just a thought. Good luck with your next one, hopfully they will find a more definate answer this time.